The All of Us Data and Research Center: Creating a Secure, Scalable, and Sustainable Ecosystem for Biomedical Research

Author:

Mayo Kelsey R.1,Basford Melissa A.1,Carroll Robert J.2,Dillon Moira3,Fullen Heather1,Leung Jesse3,Master Hiral1,Rura Shimon3,Sulieman Lina2,Kennedy Nan1,Banks Eric4,Bernick David5,Gauchan Asmita1,Lichtenstein Lee4,Mapes Brandy M.1,Marginean Kayla1,Nyemba Steve L.2,Ramirez Andrea6,Rotundo Charissa7,Wolfe Keri1,Xia Weiyi2,Azuine Romuladus E.6,Cronin Robert M.8,Denny Joshua C.6,Kho Abel9,Lunt Christopher6,Malin Bradley2,Natarajan Karthik10,Wilkins Consuelo H.11,Xu Hua12,Hripcsak George10,Roden Dan M.21113,Philippakis Anthony A.5,Glazer David3,Harris Paul A.2

Affiliation:

1. Vanderbilt Institute for Clinical and Translational Research, Vanderbilt University Medical Center, Nashville, Tennessee, USA

2. Deparment of Biomedical Informatics, Vanderbilt University Medical Center, Nashville, Tennessee, USA;

3. Verily Life Sciences, South San Francisco, California, USA

4. Data Sciences Platform, Broad Institute of Harvard and MIT, Cambridge, Massachusetts, USA

5. Broad Institute of Harvard and MIT, Cambridge, Massachusetts, USA

6. The All of Us Research Program, National Institutes of Health, Bethesda, Maryland, USA

7. Vanderbilt University Medical Center Enterprise Cybersecurity, Vanderbilt University Medical Center, Nashville, Tennessee, USA

8. Department of Internal Medicine, The Ohio State University, Columbus, Ohio, USA

9. Department of Medicine and Institute for Augmented Intelligence in Medicine, Feinberg School of Medicine, Northwestern University, Chicago, Illinois, USA

10. Department of Biomedical Informatics, Columbia University, New York, NY, USA

11. Department of Medicine, Vanderbilt University Medical Center, Nashville, Tennessee, USA

12. Section of Biomedical Informatics and Data Science, School of Medicine, Yale University, New Haven, Connecticut, USA

13. Department of Pharmacology, Vanderbilt University Medical Center, Nashville, Tennessee, USA

Abstract

The All of Us Research Program's Data and Research Center (DRC) was established to help acquire, curate, and provide access to one of the world's largest and most diverse datasets for precision medicine research. Already, over 500,000 participants are enrolled in All of Us, 80% of whom are underrepresented in biomedical research, and data are being analyzed by a community of over 2,300 researchers. The DRC created this thriving data ecosystem by collaborating with engaged participants, innovative program partners, and empowered researchers. In this review, we first describe how the DRC is organized to meet the needs of this broad group of stakeholders. We then outline guiding principles, common challenges, and innovative approaches used to build the All of Us data ecosystem. Finally, we share lessons learned to help others navigate important decisions and trade-offs in building a modern biomedical data platform.

Publisher

Annual Reviews

Subject

Cancer Research,Genetics,Biochemistry, Genetics and Molecular Biology (miscellaneous),Biomedical Engineering

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